Developing a community to mitigate caregiver burden in inherited retinal diseases using AI labelled structured and unstructured data

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The project involves creating an online community for carers of people with inherited retinal disease (IRD). Persons with IRD suffer from vision loss and blindness. Often, the illness manifests itself as a young adult, although it can affect people in older age. Family and friends provide a great deal of support for these patients are unpaid. As it affects younger people and is not a fatal disease, will result in the necessity of lifetime care, often from parents or older relatives. This care is usually unpaid, conflicts with paid work and responsibilities and results in guilt, stress, depression and psychological problems.The online community will allow carers to communicate with other and share problems and successes that they experience. Unlike professional carers, unpaid carers do not have the luxury of taking time off, have professional courses or have senior carers/managers to unburden issues. Unlike patients, they do not have GPs or healthcare professionals who can directly solve their problems. This means that many issues that carers suffer are hidden and are unresolved. Carer groups are helpful but require taking time off care or paid work. Anonymous internet forums are helpful as they are more accessible - however, the quality and timeliness of responses are inconsistent. A person replying who has not been through the burden of being a carer is less likely to provide useful advice. The project will a richer community where users are self qualify responses by seeing other peoples 'burden score' so that users can choose to assign their attention to people in similar situations to themselves.